Tiredness....

Everyday living
1

Hi

I’ve recently been diagnosed with MS (three weeks ago). It was actually kind of a relive to finally have the answer. It’s been years and to finally be told I haven’t been going mad, something is causing it. Anyways apart from the relapses I have had over the last five years, one thing vie found more recently I’m struggling with is the tiredness. It’s ridiculous some days! Wondered if anyone else has the same problems, and any advice or drugs anyone is on to help with this? Also I’ve been told by my neurologist I will be starting treatment, I’ve read a bit into what drugs are used. Is it something I choose or am I just put on whatever drug they decide? Any advice appreciated, all still quite new to me.

Thanks , A :slight_smile: x

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I was diagnosed in January so am new to it all too. I suffer from fatigue too and I am being put forward for a course on managing fatigue. I believe there are also drugs, but hopefully someone else will be able to comment on that as I am not on them. I had my first appointment the disease modifying clinic in Oxford this week and basically the neuro told me about the drugs and then said to call my MS nurse once I had made up my mind, so it is very much up to you. Good luck whichever you decide. I think I am going with Copaxone.

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Oh and the MS Society also have a leaflet on managing fatigue if you haven’t already seen it. You can download or order it from this site somewhere.

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Hi there!

I was diagnosed 6 yrs ago, and felt the same relief you are feeling, but it was also a bit of a mad, sad, lonely time as well.

Your struggle with tiredness (or fatigue as it is better discribed), is something I suffer from terribly. My neurologist suugested I tried ‘Modafinil’ a couple of years ago, and it definitely helps, but it is not a cure.

It is a drug that is used to increase alertness, and helps with that mental fatigue completely overtakes me sometimes. It is mostly used for conditions like narcolepsy, and sometimes prescibed for shift workers.

My neurologist said that my GP would have to okay the presciption first, as it is not licenced for Ms in the UK, but it all went smoothly and I got the presciption.

I started on 100mg twice a day, but have had my presciption upped to 200mg twice a day. No eyebrows raised by my GP.

Like I mentioned earlier, it is not a cure, but it does help.

I really do understand what you’re descibing, It wasn’t until I was diagnosed with MS I even considered the difference between tiredness and fatigue, but it is, so very different. I still find the overwhelming feeling I get, really difficult to describe to others.

Modafinil will not help with your motor ability. You will still be unable to walk very far, and your legs will be rubbish, but you will be a tad more focussed and awake after taking it.

As I’ve mentioned, it is quite hard to get it prescribed these days, but talk to your neurologist and see if they can suggest it to your GP.

Good luck with all of it, and use these forums for some really sound advice, from the folk that know what you’re going through.

Lin xx

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Hi, welcome to the forum lovely. the fatigue we all experience with the illness is awful so please know you are.not alone. Some days it can be dreadfully debilitating and others quite manageable, but one thing is for sure its horrid. I have taken Modafanil to help with mine for many years, but it sadly does not stop it. I find exercise helps and a reduced carb diet but these are my personal findings and rest when it gets too unbearable. It is very easy to think i’ll fight this and for the most I wholeheartedly support this but some days you may have to just have to give in and rest as best you can. I do appreciate it is more difficult when your working and have a family to care for and I do hope lovely you will find support on your bad days. But please know you will have good days. I use Avonex as my DMD been on it 11 years and I am very happy with its help in the management of my ms. Remember we are here to support you good days.and bad. Big hugs Joy x

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Hi

I’ve been on Amantadine for my fatigue for just over a year. It’s worked well for me, but I know for some. it’s not worked/stopped working. Before I was prescribed Amantadine, some days I felt like a zombie. The lights were on, but nobody was home. Also, my OT told me to do any physical exercise in 10 minute stints.

With regards to DMDs, I’m due to start Tysabri. I’m just waiting on the results of the JC virus test. My MS Nurse went through the drugs with me when I saw her in October, then in January, she went through Tysabri with me in detail because I’ve had 2 relapses in less than 12 months, so it’s classed as a highly active form of MS.

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Hi, welcome to the show.

Modafinil and Amantadine are used to treat fatigue. I think modafinil is meant to be the best one, but it’s also very difficult to get prescribed. Here’s a couple little tips that might help manage your fatigue. Firstly, notice how what you eat affects you. I know anything made with white flour, like white bread or pasta, will leave me feelng lethargic. And when you cook, do twice as much and then have the leftovers the next day. Also, every now & then I’ll cook a big chilli or something, then divide it into portions & freeze them for another easy meal.

Take care

Dan

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I just want to add that I started taking modifinal about a month ago after nearly 10 years into my ms journey. For me, it changed my life really. I am working full days without collapsing at the end of it and shockingly also have energy to have a quiet meet up with friends afterwards and even a bit of house cleaning if needs be. I am by no means back to 100 percent but being able to do my job which I love and have a wee bit of energy left over for myself afterwards! well! it’s been amazing. I was doing 6 hour days and coming home and going straight to bed pretty much before. Drugs different for everyone, but worth a try I reckon. On copaxane and iron supplements too Good luck

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Scott brown, what you say is interesting as I had 3 relapses in 5 months leaving me with residual symptoms (and 6 months off work), but was only offered the first level drugs. Must be the usual postcode lottery I guess.

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I thought it was weird not giving me any first line treatments first saying my MS nurse went through them with me in October and showed me how to use them.

It probably is due to the postcode thing.